"Tamoxifen Road" - Support and Encouragement

Rain88, I also increased my activity, especially before starting radiation as I had heard that being active helped with the fatigue. I was walking at a moderate pace, 6 days a week for about an hour. By the time I started Tamoxifen, I felt better than I had in ages. I was able to keep this up for the first 2 months on Tamoxifen and then things changed virtually overnight. I found myself hobbling out of bed in the morning, feeling as though I had aged 10 years. I'm still walking, but not as long as the fatigue has impacted my endurance. I try not to get too discouraged, but I really thought that I was going to power through the next 5 years by making diet and exercise a priority. I'm going to keep moving, but with a lot less power

Yes, Rah, Mom2bill, I can totally relate to what you're experiencing; not fun.

On a different note, does any of you find that you're hair isn't growing that much? Due to Covid, I haven't cut it in 8 months and it's almost the same length! Meanwhile, all my friends had already gotten their hair cut at least twice! I am not too bothered by it, but really curious if it's just me.

Beaverntx, I would be really upset if I started to lose it, on top of it growing so slow. I know it's not up to us what happens when on meds, but I really hope hair falling out won't add to the slew of SEs. Thank you for the biotin tip.

Wow, that's very reassuring to hear, Diane! Thank you for sharing. I don't know anout anybody else, but for me, I am afraid that one extra SE, no matter how insignificant, might tip over the "Ok, I got this." attitude. There is a lot of stress in our lives and not only from this; yet we keep soldering on, encourage one another and hope for the best. I feel greatful for this site; it's been not only a source of information, but also a way to hear and learn from others' experiences. It helps feel I am not alone! So my fervent wish and hope for all of us is that the worst is behind! Diane, 4 years on Tamoxifen is SUPER! (((Hugs)))

Rain, I’m sorry to say that I have been finding several strands of hair on my hands each time I wash it, so the thinning has begun. My hair is still growing, but it has gotten really dry. I have seen people report hair thinning, but probably an equal number have stated that hair loss was not an issue. So, try not to get ahead of yourself on this one since there seems to be such variation in terms of side effects. I will keep my fingers crossed for you.

Beaverntx, I’ll have to start looking for a biotin shampoo. That’s for sharing that tip.

Rah, I’m with you regarding exercise. It’s hard to get started on many days, but I do feel better when I’m done...both physically and mentally.

Take care everyone.

Hi, I started tamoxifen a little over a week ago. My hair started falling out a few weeks after completing radiation. It's not a lot, but when I go to put my hair in a pony tail a few strands come out. I hope it doesn't get worse with the tamoxifen. Thanks to everyone for all of your insights on SEs. My MO said I could do two years of tamoxifen then switch to an AO for five years.

Rebalilly, the oncology nurse told me not to take benadryl because it reduces the effectiveness of tamoxifen. At the bottom of the link below is a list of medication to avoid that interact with tamoxifen.

https://www.breastcancer.org/treatment/hormonal/se...

Rah2464, I just bought a spinning bike so I could do spinning classes at home with the peloton app. I'm looking forward to spinning again.

Rebalilly I strongly urge you to get a referral to an endocrinologist for the osteoporosis. They are highly trained to help with that. I too have osteoporosis and my endocrinologist has been great. He's in the same hospital network as my MO and all the other cancer docs so they can all see what's going on with me.

Truly, get to an endocrinologist for the osteoporosis.

Edited to say I started on Prolia, had an allergic reaction to the second shot and will be on Tymlos in a month (daily injections for two years) because I want to be able to run w/o my bones breaking (two have broken--pelvis and foot). Reasonable goal, I think.

Hi Pebblesv and Others,

It has been a little while since I have last posted, but in April I fell and broke my ankle (fibula to be precise), with the blessings of my Oncologist I got off of Tamoxifen for fear of blood clots forming due to my injury, with the intention of starting back once my ankle healed, as it was defined as a nondisplaced fracture, so no surgery needed. Ha! It is now August and I am still fighting with this fractured ankle, it has now become a non Union fracture, so had CT scan last Thursday, orthopedic dr has me not bearing any weight on it and will find out more at Aug 19 appointment, ugh! So surgery might be in my future!

Plus, not sure if Tamoxifen is safe for me if I have same genetic condition that causes blood clots that we just found out my brother has, a pulmonary embolism almost killed him a few months ago. I am waiting for his medical records to arrive so that my Oncologist can test me for what ever condition he has.

I can't switch to AI due to broken ankle, Oncologist told me that Evista might be an option for me to try as Tamoxifen has wrecked havoc on my uterus. About two months after stopping tamoxifen I had a period like bleed, weird, I had like a PMS headache and cramps, uterine biopsy was negative for cancer. Gynecologist suggested that maybe she can do a DNC at same time as my ankle surgery should I need it. I didn't know that you could have more than one surgery at a time!

I have been taking tamoxifen for the past 3 years and my oncologist told me that some ladies do ok after stopping it at that point in time. A friend of mine who stopped taking it after 3 years due to side effects told me that there are no guarantees and it is a crapshoot!

So, anyway I am literally in limbo for right now and that is the story of my life!

Grdngrl I have peloton envy ha!

GoKale4320,

I have wondered if I might have osteoporosis and that might be a reason why my broken ankle is now a non Union fracture 4 months after my injury. Surprisingly my orthopedic dr did not even mention this possibility. My oncology does want to do another bone density test on me, the one that I had done in 2016 when I was first diagnosed was normal, then I took Arimidex for 2-1/2 months, horrible bone and joint pain for me, I do have arthritis in my spine and I think my fingers as well.

Anyway, I do plan on getting another Dexa scan in the near future. Hopefully my ankle heals, will find out ct scan results next week and whether I will need surgery.

Thanks for sharing your experience with Evista, hopefully it can work for me. Although I can stop taking hormonal therapy, I wanted to take something for 5 years at least.

Celand

Bellevue, what is the dosage your MO recommend please? Mine said 5mg low dose and said it is the same effectiveness as 20mg...

edj3,

I do not know. My surgeon prescribed the 5mg for me and I wonder the same you do too. I am concerned about the effectiveness.

I will have 2 appt on 9/1 and 9/2 with 2 different MO and I will confirm with them.

I have the pills and have not taken yet and will wait till I see them.

Grdngrl, Thank you!!

lady,

Why you take tamoxifen before surgery? I had asked my surgeon whether I should take it before and answer was no....

What dosage are you taking

everything - I believe most people do not start until after surgery. My tumor measured bigger on mri than the ultrasound. Less than 2 weeks apart. Has this happened to anyone else? It was 6mm and 11mm. Other two areas are 5mm each on mri.